In most people’s minds, there is no scarier diagnosis than cancer. Cancer is more than just one disease. Jayne Pickard tells her story about her symptoms diagnosis with Hodgkin Lymphoma during the pandemic, and how it has affected her life and family…
We have had our fair share of cancer in the family, and I have always been aware of the signs for it, so when I had a telephone appointment with my GP in January 2021, I wasn’t surprised when my symptoms alerted her to ‘red flag’ me through the two week cancer pathway.
At the beginning of 2021, I had noticed that my left ankle was a lot more swollen than usual; my right being swollen all the time thanks to nerve damage caused by bulging discs in my spine. So, to have both of them swollen made me think possible kidney problems or my hypertension medication maybe needed changing. I wasn’t prepared for the barrage of testing to come.
In my appointment my GP informed me that recent blood tests had shown a very high amount of red platelets and asked if I had any gastric problems. I told her yes, I had constant heartburn despite taking daily Lansoprazole (to reduce acid production) and a couple of really bad bouts of indigestion. She was concerned and asked if there was a family history of gastric cancer; yes, my dad had pancreatic cancer, and my grandma had stomach cancer. A week later, I was on my way to Airedale Hospital to have an endoscopy. I had one 7 years previously and knew what it entailed, but I was so nervous this time that the doctor couldn’t carry it out properly and the procedure failed. He ordered two CT scans, one with a barium meal, the other with dye injected via a catheter in my arm.
A week later, I drank lots of water and had nothing to eat before my first of two scans within three days. The radiographers at Airedale were lovely and talked me through the scan, I have had MRI scans before, but never a CT. I needn’t have worried, it was a doddle compared to the tunnel of an MRI. I left feeling that they would probably tell me that all was well, I just needed to up my medication. That evening, I was scratching my neck and head having had a reaction to the dye used in the scan and I discovered a lump in my hairline, about the size of a 1p in circumference and raised about 1cm from my skull. Two days later was the barium meal and I had heard all kinds of things about that! But, off we went (myself and Laura) to Airedale once again and I was taken into the room almost immediately. Two lovely ladies gave me a thick, grey, chalky liquid to drink as they took X-rays of my oesophagus whilst I swallowed. I stood on a platform, with a large table to my right, I had to turn slowly with each drink. Then the table was slowly lowered, with me on it (that was a weird sensation), for them to take more X-rays of my stomach at different angles. Then off I was sent to await the results in a week or so…
The following day my phone rang, it was the hospital; my heart sank, that had to be bad news so quickly. The lovely specialist nurse told me that the scans had found several problems, the biggest concern being enlarged lymph nodes, which they wanted to take a biopsy of. Alarm bells rang, they suspected cancer. The other problem was a muscle spasm when I swallowed, which is what was causing my digestion problems and a blockage in my right kidney, but they would sort out the biopsy first, that was more important. I received my appointment that weekend and it was for the following Wednesday, they really were pushing things through quickly and that scared me, but I tried not to show it to my family. On the afternoon of the biopsy, my friend and neighbour Elaine, took me to Airedale and I went to Radiography to await my appointment. I was called in pretty quickly and the radiologist numbed an area just above my collarbone, talking me through each step as he took the biopsy. I didn’t feel a thing and about 15 minutes later, I was on my way home again with a dainty little plaster over my ‘wound’. As I left, the radiologist had said that they take around 7-21 days to get the results and sometimes they asked for another sample, but not always. My mind was all over the place, but I kept thinking positively, it wouldn’t be cancer, I wasn’t unwell, hadn’t lost lots of weight, no blood coming from places there shouldn’t be… I’d be fine! Yes Jayne, you keep telling yourself that!
Exactly three weeks later my phone rang just after 9am, it was Monday March 1st 2021 and I knew immediately that it was my results. The lovely specialist nurse asked if I would like an appointment to see the doctor in a couple of days or she could give me the news over the phone. I chose there and then, I wanted to know! I will never forget hearing her say that the biopsy had revealed a lymphoma, which I knew was cancer and as she explained that it was a slow growing blood cancer called follicular lymphoma, that it was treatable yet incurable, my heart raced and tears began to fall. I had cancer. I might not see Joseph grow up. I might not live to old age… I wanted my mum! (Sadly both my mum and my dad are dead, mum in 2001 and dad in 2010). The nurse answered what questions I could think of, which weren’t many, and then said that I would be referred to haematology, they would take over things from now on.
So here I am 6 months later and it all feels pretty surreal. The lump on the back of my head is slightly bigger, but nothing to make treatment imminent. My appointment with the haematology doctor was on the phone (thanks to Covid-19) and he assured me that the affected lymph nodes were small at 1-2cm in size, they would wait until they were 4-5cm or I developed more symptoms; drenching night sweats, drastic weight loss and more lumps developing which I can feel or the existing ones are bigger. I am now on what used to be called ‘Watch & Wait’ but is now ‘Active Monitoring’ and I will have three monthly hospital appointments for bloods and scans. I feel a little in limbo. Explaining to people that I have cancer for the rest of my life and I’m not having any treatment (yet) is weird. People automatically hear cancer and assume chemotherapy, radiotherapy, bald head etc. I have had friends questioning me; ‘What treatment are you having?’ ‘When does treatment start?’ and I can’t say; when I tell them there isn’t any just yet, I get a puzzled reply of ‘but why?’ and I can’t tell them anything other than what I already know. It begins in the lymph nodes and causes them to enlarge, weakening your immune system, I now have to be careful who I’m in contact with, where I go and what I do, I’m susceptible to infection because my immune system is compromised.
The hardest thing I have found to cope with has been telling my grandson, Joseph, who is 11 years old and the absolute light of my life. He was born just before my lovely dad was diagnosed with pancreatic cancer in 2009 and without him I don’t think we would have coped as well as we did when my dad died 11 weeks after diagnosis. He is such a caring, sensitive lad, and so much like my dad; telling him took a while. I got a book from Lymphoma Action UK, laying down the symptoms and outcome for non-Hodgkin’s lymphoma, highlighting what was pertinent to my diagnosis. The day came and we sat on my bed, just me and him…
“You know Grammy has been seeing the doctor at the hospital because there’s something wrong?” I asked him cautiously.
He nodded, with his head down.
Taking a deep breath I just told him, “Well, it’s cancer… but don’t worry, it isn’t going to kill me, I’m not dying. They can treat it, but it won’t ever go away.”
He burst into tears.
We hugged tightly and I waited for him to calm down before I carried on. I showed him the bits I had highlighted in the book, reiterating that I was going nowhere, I would live to see him grow up, get married and make me a great grammy! He seemed to accept that and off we popped down the stairs to the rest of the family; his mum Lisa, my eldest daughter, his dad Andrew and my other daughter Laura. The moment we walked into the living room, he went straight to his mum and burst into tears again. I’m glad that he’s old enough to understand things though and has now accepted my lodger, Hodge (as I call it!) as something we just need to get on with.
And that is just what I am doing; I already had autoimmune problems before the diagnosis of lymphoma, so for me, it’s just another health problem to add to the list. I joke that had I been a horse, I would have been shot long since with the amount of health problems I have. It certainly helps to be positive, especially when it seems to be one thing after another. When we got a spell of hot weather last month, I noticed some rather angry red, lesions on my left forearm and made an appointment at my doctor. That resulted in being told that they were pre-cancerous actinic keratoses and I needed to be seen at the skin cancer clinic, St Luke’s, Bradford, it never rains but it pours! I spent most of my childhood suffering badly with sunburn, blistering, bright red, peeling skin, you name it; my teens were spent baking in the sun all day long, yes I used sun lotion, but I still burned; then in my 20s and 30s I used baby oil (yes, I know!) to go a deep, golden brown and I loved having a tan, it made me feel better. Then as I aged, I noticed scaly patches of skin appearing on my arms and legs, everywhere I had been exposed to the sun, and I ignored them, it was sun damage, of course it was, but I didn’t have moles, they were more susceptible to skin cancer weren’t they? But no, of course any type of skin gets damaged if it isn’t protected in the sun and now here, I am, 61 years old and looking at potential treatment for two different cancers. If, like me, you have fair skin which freckles and/or reddish coloured hair (mine is auburn), please don’t sunbathe and burn to a crisp. I don’t know if my lymphoma and skin problems are connected, but chances are that they are.
I have always been a ‘take each day as it comes’, go with the flow kind of person and getting the news that what I thought was something as simple as upping my anti-acid medication, was actually cancer, floored me. I spent the following days and weeks ranging between why me and what the heck had I done in life to be given these problems with my health? Then came anger, quickly followed by fear of the unknown, it was all alien to me. Even though I had seen loved ones and close friends suffering with various types of cancer, from lung cancer to pancreatic, bone to breast, and yes, non-Hodgkin’s lymphoma, this was me, it is happening to me, and I have no control over it. But… I will tell you this, IT won’t control ME!
When I told a nurse friend, her reaction has stayed with me, it was, “Oh follicular lymphoma is a good cancer to get if you’re going to get one!” and I can see her point.